Tag Archives: Memories

That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

I found a really cool video today, but before I link to it, some background on how and why I found it.

When I was born, my family lived in a redwood forest in the coastal mountain range of California. I was recently reminded of the place by photos of redwoods — close to the only things that can make me homesick for California.

This is a photo of my dad holding me on the porch of our house.

[Photo Description: A photo of my dad holding me as a baby. My dad is a big guy with black hair, a full black beard and mustache with grey starting to show, a straight nose, and medium brown skin. He’s wearing a white shirt. He is looking at me and smiling. I have only wispy hair of what looks like a brownish color you can’t fully see because of glare, and pale skin. I am wearing a mostly white… something, either a shirt or a dress. I have big eyes, a turned up nose, and my expression is the same as my “default expression” always has been, with a so-called moebius mouth. One of my arms is out to the side, the other seems to be resting on my dad. In the background there is the yellow wood of the porch railing, and a darkened area with a bunch of green plants.]

He used to take me out on that porch at night to listen to the owls.

This place is where my earliest memories come from. They’re not the kind of memories I can describe about later life, but rather the same sort of dense, multilayered awareness that I use to understand cats. They’re about the sense and feel of the place rather than about the categories that people’s minds usually impose on things.

There was one tree out there that my family always called the Mother Tree. It’s a large redwood tree within very short walking distance of our old house there. When I was in college, I did a project on redwood forests and went up there again to take some photos of that tree. It was those photos that got me doing the web searches that helped me find that really cool video.

[Photo description: Photo of a large redwood tree in a redwood forest. Parallel to the trunk of the tree on the left are several things that look like branches, except they’re going straight up and down.]

[Photo description: The same tree as in the last photo. This photo is taken further to the left. So the right side of the photo is half of the tree trunk, and in the center of the photo are those strange up and down branches.]

[Photo description: This is the same tree. Except this time, the view is looking up towards the top of the tree. You can see that those odd vertical branches are connected to the tree by horizontal branches, and that further up, the vertical branches have lots of little horizontal branches coming off of them.]

[Photo description: The same tree. This view is looking more directly up, and what can be seen is a bunch of different vertical branch structures attached to the tree by horizontal branches, and sprouting lots of little horizontal branches of their own.]

[Photo description: The same tree. This view is also looking up, but from a different position on the ground. The colors in the photo are darker since this is taken from the shadowed side of the tree. You can see mostly one vertical branch structure in this one, that looks for all the world like another tree floating suspended in the air by a horizontal branch.]

[Photo description: The same tree with a couple surrounding trees visible. This is similar to the last picture, only darker and out of focus, and from a slightly different ground position.]

[Photo description: The same tree. In this photo, only vertical branches are visible — the ones closest to the ground. Some of them are shaped like regular branches, and some of them are kind of strange and blobby.]

[Photo description: The same tree. Only in this picture, it’s kind of off to the side, and you can see more trees and what looks like the edge to the forest or at least a clearing.]

That tree is amazing by the way, and not just for how it looks. The last few times I visited it, I’d lie down on the various grooves at ground level. It has a feel to it… old and treeish, although I doubt that makes sense if you’ve never met an old, treeish tree. Trees of this sort seem to go in for the same intense, dense multilayeredness that cats do. Only more so.

Anyway, today I got curious about why there were what looked like trees suspended in the air by horizontal branches attached to a bigger tree. You’d be surprised how difficult it is to put that into a web search, even knowing the species of tree. You’d also be surprised how few descriptions of redwoods involve this phenomenon, despite the fact that it’s pretty amazing.

What I finally found was that it’s called iteration: This one tree has trees growing out of it, and those trees can grow even smaller trees, and so on, and they’re all part of the same life form.

And in searching on iteration and redwood trees, I found a TED talk video by a guy whose family are some of the very few people climbing up into the canopy of redwood forests (trees even bigger — much bigger — than the big one I just showed you) and exploring up there. There’s an entire ecosystem up there with animals and plants that have never seen the ground, some of whom exist nowhere else. The video can be captioned through a menu, in seventeen different languages. And there’s a place on the web page that you can click to get a transcript in English.

Here is the video. You can choose the language of the subtitles you want in the dropdown menu that shows up once you start the video.

You can go to Richard Preston on the giant trees to read the transcript. Oooh and he’s written a book called The Wild Trees that is available for Kindle! Three guesses what I’ll be reading soon.

The redwoods may make me homesick, but I also know that like a lot of other experiences, that place is etched into my brain. All I have to do to experience it again is curl up and remember, letting that dense layered quality soak into my body. I don’t have to be able to get out of bed or travel 3500 miles to experience this or any other place I’ve already experienced. I can just be there as fast as I can remember. My memory isn’t visually photographic, but it captures the sensory feel of the place and anything that happened there, better than it captures anything else. It’s like Google Earth in my brain for something far more intense and immersing than pictures.

I knew Adam in terms of who he was after he’d already been created. I knew this funny, smart kid who liked to grab my hand and walk in circles with me, who fearfully tried to hide in my room every night when staff came around to tie him to his bed, who looked and sounded very non-standard, and all of these things were just part of Adam. The non-standardness no more and no less than any other part of him.

The only time I heard about Adam’s mother was through those sorts of overheard staff conversations that let you know exactly what you are to them. Through them I heard that no mother should be blamed for “giving up” a child like him, that the unusual but not unpleasant sounds he made were animalistic and unbearable to listen to, and that people like him were, in general, impossible, and should be locked up for the rest of their lives. I heard a lot of pity for his mother. I never once saw her visit — and even the most screwed-up parents usually visited their kids. She had to have at least some money because this was a private institution. But she was never there, and staff made it sound understandable that she would never want to see her child again.

I didn’t know Adam through staff eyes, and I did not know him through parental eyes either. I think this was for the best, all things considered.

And the same has been true of any disabled person I’ve known. Not all of us have been friends. Not all of us have even liked each other. There can be all sorts of negative things in between us like status and power hierarchies, stereotyping, pity, and so forth. But at the same time there’s almost always something missing that I’m glad is missing, and something there that I’m glad is there.

I have never mourned the existence of someone the first time I met them. (Or after that for that matter.)

I have never grieved that someone was not the normal person I expected and hoped for. Not even for a little bit. Not ever.

I have never “had to come to terms with” the fact that someone I knew was born different.

I have never had any urge to commiserate with anyone else over these sorts of things.

I do not look at a person and divide them artificially into the “normal” parts of them that I find tolerable and the “abnormal” parts that I find unbearable and tragic.

I do not look at my friends, compare them to other people their own age, and think how horrible it is that I don’t have the good fortune of experiencing my friends hitting all the ‘typical’ milestones for their age group, there is no sense of loss here.

These ways of thinking are just utterly and beautifully absent.

It’s right that they’re absent. It’s wrong when they’re present. I keep hearing we have to allow for the fact that it’s only natural for people (you know, real people, which I’m not) to grieve this part of our existence. How it’s just wrong, downright insensitive, to want more from people.

Want to know why I and many others I know get nervous about reading blogs by nondisabled parents of disabled people? Even many of the “positive” ones? Stuff like this (paraphrases of stuff I’ve really heard in dozens of variations for each one):

“I go into his room every night while he is sleeping. And he looks so normal. And my heart breaks wondering who he could have been if it weren’t for [insert condition here].”

“It hurts so much every time I see normal children her age. I realize how many milestones she hasn’t hit. How far behind she is. And she may never catch up…”

“Other people will grow and change, but my son will be left behind. Other people become adults, but my son will always be a child.”

“My daughter has to live in a group home because she lacks the skills necessary to live on her own.”

“They said my son would never walk, talk, or take care of himself. And now he’s done all those and more. I am so proud of him.”1

“I overflow with love and pride every time my daughter looks me in the eye, gives me a hug, or uses her words. I would not know how valuable such things are if she didn’t struggle so hard to accomplish them.”

“Life with my son is bittersweet. I love him more than life itself but I know the things he will never do and it makes me sad.”

“I am constantly having to fight to pull my daughter out of her own world and into the real world. If it weren’t for me, she would be lost.”

I could go on, but I won’t. All of these sort of comments seem to be commonplace among nondisabled parent bloggers. When I question them people tell me they can’t help their feelings. But the fact is that without certain disability prejudices, they wouldn’t feel that way. And there are right and wrong ways to write about prejudice-based feelings. The right way puts them in the context of ableism. The wrong way simply serves to reinforce ableism in readers. And for disabled readers who could actually be harmed by the prejudices behind the feelings, the wrong way can feel like the twisting of the knife.

The post I just wrote is actually from an old draft on my computer. It seems that I tried to write this in two different ways. Instead of trying to synthesize them into one post, it seems better to just post them both at once. It’s a little repetitive but I’d rather do this than lose the slightly different meanings that each one has.

Despite appearances not response to any recent discussion. Just coincidence brewing in my head for some time. Also despite appearances not poetry. Just way of handling language at the moment.

I knew you
I didn’t know your mother

I only heard about her
In gossip made by staff
The sort of words they always said
That told us who we were:
They pitied her for having a child like you
And said it was good she put you away
And anyone would do so in her place

I knew you after you were already created
And I knew you roughly the way you were

I did not wonder why you were the way you were
I did not mourn that you were not someone else
I did not have a grieving period when I got to know you
I did not compare you to other children your age and cry that you did not do the same things they did
I did not see you as a special angel or a holy innocent
I did not see you as a normal boy who was stolen and replaced by an empty shell

And that is as it should be
And that is as it should be
And that is as it should be
And that is as it should be

Nobody should experience these things when they meet someone else
Yet people stand around commiserating with each other over all of those things
I walk around on the outside
Knowing I can never be part of that
Hoping they don’t notice the knife-pain that they cause

I know I am supposed to understand
I am supposed to grant that this is all natural
I suppose I can see when the world teaches you to think a certain way
That good people will come up with horrible ideas sometimes
I know I have thought and done horrible things before

But how long do we have to be patient
While the groups of people meet with handkerchiefs in hand
And blow their noses about the existence of people like us?

How long before they too will see
Beneath their shawls of tears and pain
Lies naked bigotry?

How long before the world stops glorifying the parents’ pain
And sees it as a tragedy of prejudice
Instead of a tragedy of disability?
(If there must be tragedy

How long before we don’t have to tiptoe around
How long before we can say
This public exhibitionism of pain and suffering at our existence
Denies our full humanity

How many more disclaimers
How many more do I need to make
To show I am not evil
For pulling back the curtain on evil
Will there ever be enough
Or will this always be
That they’re victimized
By having to face the truth
Of how the way they see us
Affects the ones like you and like me

It interests me that the way you and I related to each other
Is not exceptional when it comes to us
We are those below and those below are seen as
Sticking with our own kind

It is exceptional for one of those above to like us
To not mourn for our existence
This is praised as if it’s an achievement
It is just the way things should be

When you and I liked each other
Nobody praised us
If they took the time to notice at all
They either seemed indifferent
Or tried to split us apart

Not all of us liked each other
We had our own hierarchies
And prejudices
We were not some utopia
We are just as much a part of the world
As anyone else
And some of what happened was ugly

But we still saw each other
In a way the others didn’t see us:
We saw each other as we were
Not as we could have been
The sense of tragedy was entirely absent

One day I want to walk up to a nondisabled person
Wipe the tears from my eyes and say
“How tragic — you could have been disabled
And yet” (sniffle) “you had to turn out normal” (wail)
“Oh well. There’s always hope of a cure.”

What? You don’t see each other that way?
You don’t wonder (constantly) what might have been
If only, oh if only you were disabled?

It’s very simple:
Through our own minds
We are not lost and diminished
We are not those who would otherwise have been complete
We are real and whole
Because we are

1 If the inclusion of this line seems offensive, please read the third comment on this post. I included it because the constant recitation of this line can be part of an overall pattern, that came up in a discussion between me, a nonspeaking boy, and his mother. If you use it outside of that overall pattern, I’m not talking about you. But the fact that the line is repeated to the point of cliche does mean something, and it’s not always something innocent. I also don’t mean in any context that it’s wrong to teach or learn those skills. But it can sometimes be part of a distancing, fear, and even hostility towards people who for whatever reason don’t have those skills, a sense of “If she had turned out like you, it would have been awful.” Again, if you truly don’t have that fear, I don’t mean you.

A friend of mine read my post on my reaction to the blog carnival theme of intersectionality. She and I have fairly similar thought processes, and both arrived at the same conclusion about intersectionality as a concept. (That is, that it’s a fairly abstract theory-land construction of a very real-life situation and that we preferred practical descriptions to using an abstract term for it.) However, she arrived at the conclusion instantly, and it took me a whole post worth of muddling before I figured it out. And today I finally realized why there was such a time discrepancy in our reactions.

The fact is, I come at the world as if everyone knows more than I do, thinks better than I do, understands more than I do, and is generally in all ways superior to me. It’s a deeply ingrained unconscious reaction and has nothing to do with reality or even how I think about these things (I don’t even think that kind of inferiority/superiority exists. But that’s how I think.

Don’t tell me I shouldn’t feel this way because people who were classified as gifted children/child prodigies never feel this way. It’s not true. First off, I never knew I was classified that way until (ironically) I was at an age where I no longer even tested that way (which I wouldn’t know for many years to come). Second off, I doubt the knowledge would have given me the equally ridiculous sense of superiority that it gave many children around me.

Why? Well look at it through my eyes: I was in a world where everyone but me seemed to know sone important thing that I didn’t know. My receptive language was barely there, and I relied on patterns and the keen observation of non-word-based aspects of the world around me to navigate the world. I was good enough at it that nobody guessed the extent to which I didn’t understand things, but bad enough at it that I ended up making and wearing a fake nude suit out of construction paper in response to finally watching the behavior of other people to try to piece together what was wanted of me during an assignment that was due that instant that I hadn’t even picked up on as existing. (The kid I was partnered with kept drawing attention to his hat, and lots of the paintings in a book we were supposed to give a presentation on were wearing hats. Lots of them were nude, too, so I stood in front of the room covered in orange construction paper reciting fairly random sentences.)

And understanding language was only part of it. It seemed to me that everyone other than me was moving along to the pattern of music that I couldn’t detect. And that every time I tried to insert myself into the pattern, no matter how hard I tried the music turned dissonant and terrible and pushed me out again. So I would never have guessed that my ability to turn written into spoken words, or my general ability to find and memorize and analyze the world through patterns, had been impressive enough for a five-year-old to earn me a high score on a test that people believed all sorts of ridiculous things about. (Meanwhile the people who tested me thought those abilities meant so much that they would disregard my receptive language scores and all other scores that didn’t make sense to them. My guess is that my being white and middle-class also helped them forget.). I still remember the test and the manner in which I worked out the answers. I literally didn’t know the meaning of the word “test”. But my answers were apparently impressive for a five-year-old (not so much for a fifteen or twenty-two-year-old, but that’s another story.)

Anyway, despite my talents, I never really compared them to anyone else or even knew I was ‘supposed’ to. I only knew that I was outside this intricate dance that everyone else seemed perfect at. So when I did learn to compare myself to others, I only noticed my faults. And as I got older, and the gap widened between my abilities and other people’s expectations (whether the generic.l expectations of someone my age or the inflated expectations of ‘gifted’ children), I only became more convinced that I was uniquely defective and destined for some sort of hellish life of the sort that I knew ‘had to happen’ to people who didn’t measure up.

This has resulted, even now that I understand how nonsensical such comparisons and hierarchies are, in a deeply held assumption that if lots of people write about something I can’t seem to write about, then it’s because they know something I don’t. I almost never think that my way of understanding things is real or valid. So I frustrate myself by bashing my head on a concept for (at least) hours before realizing that my instinctual reactions to the concept have merit. And even when I figure out they do, I am sitting there just waiting to hear that I am just ‘too stupid’ to contribute anything to the discussion.